Creative Everyday

Today, as we approached the neighborhood where my sweet husband has lived for more than thirty five years, I asked and he nodded that he did not know where he was.  I said that’s alright, I didn’t want him to feel sad, “you have brain disappearing disease.” He said “I do?” Yes, I said and we both laughed because it doesn’t seem possible.  It is as if  Pac-Man, the 1980s video game character, has come to earth and in the form of dementia, is gobbling my husband’s brain.  His personality persists – he is kind, sweet, diplomatic and soft spoken but he needs more and more help with the simple tasks of daily living such as how to dispense soap for hand washing  or putting on a jacket. How mysterious waving one’s hands in front of a motion-activated towel gadget seems, he thinks I have magical powers.

As we approached the front door of our home, I watch his face for a flicker of recognition.  Standing in our kitchen, he did not know where the restroom was or his seat at the table where we shared so many meals.

The published stages of dementia are no longer useful as an informational guide because he is physically strong and we continue to work out with our personal trainers every week.  I dreaded the final stage 7 because of  incontinence which limits the ability to go outside, away from restroom facilities.  We have ‘accidents’ – I think of them, now, as ‘our adventures’ and there is no way to be prepared. We stay close to home or his residence, at The Kensington.  I think the care managers are getting used to seeing us rushing back, at times, and are wonderful maintaining his new ‘normal.’

He no longer knows my name.  I was emotionally prepared that this would happen.  I tell him my name and he says “is that you?” quickly followed by a hundred “I love you.”   Love needs the simplest of words. He lights up and blushes with happiness when he sees me come through the doors of the dementia care facility. We have always enriched each others lives and when we are together, I am reminded about the depth of love, passion is forever through shattered relationships, it is heartbreaking. Dementia is the thief.

We only go now to places where we are a few steps from a restroom or a a short distance from The Kensington, his new home, my safety net.  I found a strip park alongside some new development and we love to walk there, away from fast moving cars in the street.  Yesterday we walked a little further and found a beautiful playground behind the local school. We stood and watched many happy children and adults on the swings.  I showed my husband where to sit and hold on to the suspended chains. I slowly pushed him once, he was terrified and in a panic, began to slide his backside off the seat.  “Get me off this wild thing” he yelled.  The swing wasn’t in motion, he was already leaning backwards so I told him to lean back.  He was laying on the soft mulch as I lifted his legs over the leather swing seat and to an upright position.

We walked over to a bench, sitting hips touching and I asked him if I could draw for a few minutes.  He said “is it alright if I put my arm around you like this?” He’s never asked before. He’s the one who sat on the swing and I’m still shaken because I wasn’t sure if being on a swing was a good idea. I scared him, it’s my fault, it might have been fun. He won’t remember this.

When you have dementia, all milestones are sad ones.  My dear husband and I always observed the jewish tradition of yahrzeit to honor our parents memory on the anniversary of their death by reciting the kaddish, a mourners prayer, in the synagogue and donating charity in their names.  Sometimes we burned a special long burning candle, too, marking the solemn occasion.

My dear husband cannot attend group events where he cannot get up and walk about at will.  So Friday night I attended services by myself and I stood up for Dorothy when her name was read aloud from the bema. I stand for you too, my dear husband, because you don’t remember Dorothy was your mom.  I am so grateful that I held her hand on her journey.  She always smiled when she saw me!

On April 6, 2017, I placed my husband in the memory care unit of an assisted living residential facility, The Kensington in Falls Church, VA, about 30 minutes from our home.

This was the most difficult decision of my life. It was not in the plan.   Although I had taken care of my dear husband for more than six years, it did not prepare me for the progression of dementia-related symptoms that intensified just this year. If I thought that last year was difficult, 2017 was unimaginable with both my husband and I not sleeping through the night and trying to function in a haze the next day.

The effects of dementia are profound as it steals one’s personality and then, its entire being. I see the man I married when I come to visit, he sees me walking towards him and begins shouting “she’s here, she’s here, come here, c’mon, it’s my wife”, with tears in his eyes, I get a big kiss.  In all other ways, he’s gone.  My smile communicates everything he wants to know, that he’s still loved. Any other words have little meaning and conversation is impossible.  You will think that he looks happy and his world is very simple.  We hold hands and he tells me how happy he is to see me, his gratitude shines through. I fight back my own feelings of loss and tears, where is my partner, my mate? I long to talk with my husband and tell him we’re okay.

The plan was to care for my husband at home with 24  hour home care aides, forever. His behavior was overwhelming when he walked around, in the middle of the night, hallucinating with eyes squeezed shut while chanting loudly “yes, yes, right, right” and not responding to his name or anything else.  Some nights, while naked and incontinent, he would wake me pleading “what should I do?” One night, he fell after the aide accompanied him to the bathroom and back to bed twice.  The third time, he fell and cut open his forehead with the edge of his granite sink counter just missing damage to his eye.

When his doctor viewed my phone videos of his trance-like walking, she told me that I could no longer keep him safe at home, to protect him from falls and stair cases to lower floors.  She recommended The Kensington Falls Church where she visited patients frequently and promised to look after my husband.

It is a beautiful place, looks like a small hotel and his lock-down unit is a comfortable place to live.  My husband is calm and manageable on different medications, monitored by nursing staff.

Sitting on the edge of the bed in his new room he told me that he understands.  The Director said that he knows that I couldn’t keep him safe in our home anymore.  He can’t explain what he knows intuitively but I see that he is living his life peacefully, that’s all I can hope for as we learn to live apart.

It is always these words, no more, no less.  Yes yes, right right, a chant, satisfying the voices my sweet husband hears or sees in his head.  They force a compulsion to chant but are never satisfied.  They do not abate.  They beg him to respond, over and over again. 

The voices and maybe visions, do not let go.  They are never tired and do not yearn for rest and sleep. Sometimes, with eyes squeezed shut, in the dark of night, my husband paces the bedroom hallways chanting loudly “yes yes, right right.”

This morning, after breakfast and morning medications, he sat in my dressing room with his chanting drowning out the sounds of TV news. Instead of sitting in a soft, cushy chair, he was standing at the window chanting aloud.  I used to think that it was the sound of his own voice that kept him from relaxing and being in the moment.  I want to listen in, to hear what he is hearing and seeing, responding to, I need an app for that!

In the past, I would tell him to sit still, be quiet and just watch the TV screen.   Now I’ve learned it’s futile. Dementia has succeeded in destroying his ability to control it.  I reassure him that I’m almost ready to drive him to the day care center.  He loves being with me and is in no hurry to leave home, our safe haven.

In the car, he is my co-pilot, watching for dangers on the road, while holding hands at red lights. In the car it is absolutely quiet – no chanting…peace. If a car ahead stops suddenly, I will hear two words I never hear at any other time “oh shit.”  This prompts me to stay alert and we share a laugh, narrowly escaping a road incident!

I hold you close everyday, passionately caring about your well-being and yet you continue to disappear.  In that embrace, I am fooled into thinking that you, my dear husband, are here with me.   I feel your happiness when you arrive home, off the bus from a long day at the dementia care center. I want to hold on and never let you go. I know that you are leaving and it’s the dementia taking you on a trip with a one-way ticket.

Today you were especially quiet.  I miss hearing your voice. You used to tell me funny anecdotes about your day and we would laugh together. Now I am glad when you tell me that your day was a good one and a few indecipherable words about a meal or activity.  I just heard an NPR podcast by Dave Isay, founder of StoryCorps.  It is too late for my loved one but maybe dear reader, not too late for you and the ones you hold close to preserve their stories.

I show my husband pictures of our life and reminisce.  He asks me “when was that?” and sometimes he recognizes who is in the picture, maybe our parents or his brothers.   I have scanned many of his childhood and family’s pictures but they do not prompt him to recall any specifics or identify who they are although he tries very hard and knows they are important to him.  I try to help him whenever the familiar blank expression reappears.  He loves the stories about his life.  He is still here.  He is listening.

 When you receive a dementia diagnosis, it is so overwhelming.  An uncertain future changes all plans.

We could have recorded our loving thoughts on each of our anniversaries, reminiscences of the day we married and for sure, he would have replayed those recordings many times.  I would have recorded him telling me how he always got a seat on a crowded subway because he was slim and never shy to ask someone politely to move over.  I would have recorded his memories of significant life events, bar mitzvah, receiving college degrees, shaving off a beard, being Dad to four children.  All these memories are gone.

I’ll never know which memories he would have wanted to preserve.  Maybe his grandchildren would have liked to get to know their Grandpa as a real person, hearing his voice, speaking his words and learning the value of listening and feeling connected.   Sadly, it’s too late for us, just living in the moment is a challenge with no ability to recall or reflect.

StoryCorps even has a free app  ready to record using your iphone.  Founded in 2003 and with six Peabody awards, it’s new to me.  In 2015,  they were awarded the $1 million TED prize for a powerful idea solving the world’s most pressing problems.  

It’s never too late to say I love you.

 Always wary, no one can take advantage of my dear husband without his eagle eye seeing what’s up.  Yesterday, while he was at the day care center, he told me that he “put up with” two ladies “from another country” (being politically correct), stood up and danced because they asked him to be their partner.  While he was dancing another day care participant moved his jacket to a different chair.  When he walked back to his seat where he had left his jacket, he was “pissed.” In no uncertain terms he said “that’s my chair!”

To protect his chair and avoid further conflict, he refused to dance again, sitting with his jacket carefully hanging on the seat back.

You might be wondering about how I found this out.  It is the reply to my daily query: how was your day honey?  He cannot answer this question anymore.  I am so excited when he says a few words that I can understand or piece together as in a phrase or thought but this story was full of emotion. 

I ask myself what would it be like if I did not know how my day was or even what I had experienced throughout the day. The day may have come and gone without reflective practice; in its simplest form, thinking about or reflecting on what you do. It is closely linked to the concept of learning from experience. Spent and gone hours.  Dementia has stolen from my husband the ability to reflect and make choices about time, what to do next, to plan meaningful, purposeful or just lazy activity. At the end of his day, he does not feel sadness when he answers everyday, his day was “OK and how was yours honey?”

photo: Dimitri Otis/The Image Bank

So many faces, faces with names he no longer remembers. If they were liked or especially kind to him, their names are lost but some connection lingers.

While listening to music, from my laptop photo galleries, I show him pictures of his family, my dear husband’s face alongside his children’s, then with their children.  I prompt him for their names. He does not recognize most of them.  I cheer when he identifies his brothers names with their faces and we both express our deep sadness for his deceased younger brother.

One night recently a face time call was prearranged but I didn’t dare tell him why we were lingering over dessert in the dining room because he would be anxious for the call to happen and keep asking me about when.  I did not have a specific time.  We waited for about two hours while we ate dinner.  Sadly, the anticipated call did not come.  I was protecting him from disappointment by not telling him that a family member was going to call and my husband, unable to reflect, uses all of his faculties just to live his life in present time, unable to have expectations about anything.

We go to sit in the living room and watch some “Castle” re-runs, holding hands. I am sad when family does not call. They miss out sharing his surprise and delight just hearing their voices.  He doesn’t get to participate with his warm smile, a few words and gentle spirit.  HE IS STILL HERE. I am reassured when I squeeze his hand and steal a kiss.  I try to protect him from looking at a familiar face and feel a wave of confusion, uncertain who they and what memories they’ve shared.  The sensitive soul I married ten years ago is still here.  We didn’t expect to go down this path, it is so hard, but I am on board.  His constant love and devotion  inspires my life in so many ways. It takes courage to see past what he’s lost, the continuum of decline in dementia but he still gives, with all that he has, to face a new day with cheery hopefulness.  He is still here for you too.

My sweet husband tells me he likes the lime jello dessert and I say  how happy it makes me feel when he likes something I’ve made for him. Our life is simple. I make and he thoroughly enjoys the experience of eating – all food is comfort food. Happiness is setting the table knowing what comes next – food!

I let him know that if the tables were turned (oops, I forgot who I was talking to), if I was the one with dementia, he would take good care of me too.  He says “we’re married aren’t we?”

It’s the only relationship he knows for sure, secure, safe.  He tells me “I love you” everyday, in so many ways and often his blue eyes fill with tears because he feels cared for in a deep way, overwhelmed with gratitude.

These words also come with questions, in a very soft tone of voice:

• I love you – Is it time to get up?
• I love you – What should I wear? Does it go on top?
• I love you – Is there something (to eat)?
• I love you – Should I shave, no, shower?
• I love you – Can I sit here (beside you)?

Dementia takes over his brain power but his heart remains in place.  It’s just like it was before this awful disease but now expressions of tenderness are in the forefront, almost unexpectedly.  Same quick reaction with sad thoughts, tears on a moments notice, great pools of blue. We don’t watch the DC news, who got murdered or died in a car crash, too sad.

This is one of the art walls from the regular Wednesday morning class at Insight Memory Care Center, Fairfax, Virginia, masterpieces created with love and passion from participants with disorganized brains at different competency levels.

Insight is my dear husband’s day care center.  Three times a week, his reports of daily activities are vague since he cannot retrieve descriptive words. This center is enriching his life by  giving him opportunities to face each day with enthusiasm and renewed interest. He is always looking ahead.  It is a priceless experience encouraging participants to use the skills and abilities they still possess. They cannot reflect on what’s lost.  Even when he tells me that he was sitting around in the late afternoon and it was ‘boring,’  I am so glad that he is in the company of so many people who care, the staff, and the participants, some just like him, well educated professionals whose life paths have take unexpected turns.

When I learned that the art program was on a day that he did not attend, I changed his schedule. My gratitude goes to the art therapists and instructors who lead art groups everywhere.  My husband says that the artists tell him “what to do next,” one session at a time with no pressure to hurry up and quickly finish.

He wakes me at dawn so there’s no chance that he’ll be late to the Center and miss the class.  At first he was complaining that he was the only ‘boy’ but I think there’s more now among the classmates.  Head down, marker in hand, he’s busy at work.

When participants tire themselves out searching for words, let them find self expression using colored markers and crayons. My dear husband will soon compete with me for wall space in our home! These are his works of art.

Without rational thought, he does not evaluate or criticize.  He is compliant and happiest when he performs on someone else’s cues, meets their expectations.  He is free to just color, enjoy the moment, not judge – something good to write about having a brain in decline. I am so proud of him and often tell him so!  Yesterday he came off the bus that brings him home at the end of the day and with tears in his eyes, he told me how happy he was to see me and that he loves me.  There are blessings on the rough road.